The physician has long been at the center of decision making in cancer care, but that paradigm is beginning to shift as patient-centered care becomes more widespread. Data gathered on patient experience, like Project Patient Voice, an initiative just announced by the US Food and Drug Administration (FDA), can be used by physicians and patients alike to facilitate better conversations.

“I think this is probably reflecting an overall shift in medicine,” said Chung-Han Lee, MD, PhD, oncologist and kidney cancer specialist at Memorial Sloan Kettering Cancer Center in New York City. He said that medicine used to be “patriarchal,” with doctors dictating treatments. But now, there is more interest in looking at patient preferences.

Advocacy organizations are increasingly gathering data as well, through surveys and questionnaires. But some are concerned that many are not carefully conducted and physicians should interpret the results with caution. According to Deb Maskens, vice chair of the International Kidney Cancer Coalition and long-time cancer patient, she is “concerned about the trend toward ‘pop-up’ quick surveys.” At the American Society of Clinical Oncology Annual Meeting in 2020, for example, she noticed far too many surveys that resembled “quick public-opinion polling with very little structure [or] survey design and analysis.”

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An example of such a survey includes one conducted in patients with renal cell carcinoma who were part of online kidney cancer patient communities. It was run on behalf of the Kidney Cancer Research Alliance (KCCure) and in association with researchers from other institutions. In that poster, researchers surveyed 411 individuals — 88% of whom were white — and included responses from both patients with kidney cancer who had been on systemic therapies [67%] and caregivers of these patients [33%]). According to the results of that analysis, researchers concluded that the most important aspect of a therapy is if it provides a complete response — and that toxicity, time off therapy, and cost are not significant concerns when considering treatment options.

To most respondents (86.3%), treatment success meant there was a reduction in tumor size. Stable disease was a measure of treatment success to 71.7% of participants, while an improvement to quality of life was a main qualifier for treatment success for 47.7% of respondents. The results were surprising and contradicted other larger studies, like one from CancerCare, which showed the majority (58%) of cancer patients reported being distressed about finances during their cancer care.2

Maskens’ concerns about biased sample collection in the KCCure study  were echoed by Tim Johnson, PhD, former president of the American Association for Public Opinion Research and professor emeritus of public administration at the Institute for Health Research and Policy of the University of Illinois at Chicago. “I understand the challenges and the cost of obtaining a high-quality sample, but it’s important to recognize the limitations when you take these kind of convenience approaches to sampling,” he said. He credits, or rather, blames, the advent of survey tools like Constant Contact and SurveyMonkey for the proliferation of less-than-robust survey data.

This article originally appeared on Cancer Therapy Advisor